When I last left you, I had just gotten under the care of Dr. “A,” who was supposed to be the best of the best. I wanted and deserved the best of the best, didn’t I? What I learned, unfortunately, was that reputation does not necessarily translate to superior medical care. To be honest, I didn’t really have a clear perspective on what made a good or bad doctor. I hadn’t been to a doctor since I had needed a pediatrician (for mono and many of us now know about the connection between mono and MS). So I went to Dr. “A” for a few years and it was fine. I was progressing very gradually, still ambulatory. And yet Dr. “A” put me on Linomide as part of a study.
Screeech! Hold the phone! At this point last week, while I was writing this blog, I was struck by yet another in a long series of medical events that are effects of the disease but not a manifestation of the disease itself. I had inexplicably been running low fevers for a few days. My wife had accompanied me to the ER in our neighborhood on the first night to nip what we thought could be an infection in the bud, but the doctors had found nothing. Two days later we went back: my above-and-beyond-the-call-of-duty wife had examined my nether region that I told her had been a little “strange” and discovered a “red sore the size of a baseball.” So we went back to the ER and this time they diagnosed an abscess on my bottom, the result of sitting on it all the time (dammit). The abscess had been causing the fevers and altogether draining my energy. To our relief, I was discharged very late Wednesday night. We were incredibly happy that I did not have to stay in the hospital.
Little did I know. So I was discharged and put on a regimen of antibiotics that unbeknownst to me would wreck my digestive system for the next four days. I will spare you the details, but a different woman than my darling Alida would have left me after the agonizing weekend we barely survived. Now remember, this was not the MS but rather a side effect of the disease. When I went to a doctor for a follow-up on Monday and told him about the bowel problems, he said something along the lines of “Well, you can get an over-the-counter remedy,” which I did immediately. Problem solved. Why couldn’t the ER doctor have mentioned that? It would have spared us a tremendous amount of pain and suffering.
This all brought to mind a song I discovered when I was going through a particularly difficult drug-adjustment period roughly a dozen years ago: The Verve’s “The Drugs Don’t Work” (see link below):
The drugs don’t work
They just make it worse
And I hope I see your face again
The antibiotics are finally having a positive effect, but, man, for a few days they sure made me feel worse. The line in the Verve song about seeing your face again is the singer’s way of saying, I just want things to be the way they were, before all these side effects of side effects kicked in, when I can appreciate the beauty in life rather than feeling as though I was barely clinging to it.
I’m happy to say I’m getting better and feeling stronger every day, but it’s been a rough ride. I will not be defeated and will return soon to share with you more about the doctors and me and life with MS in the Big City.